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Facetime is a great idea, Tess. Her nurse could talk to me that way too if necessary.

E has her Remicade infusion next Wednesday, and I just got a call from Kaiser explaining their new procedures. The good news is that the infusion center is no longer sharing a waiting area with Urgent Care; they've moved upstairs into the day surgery area. The bad news is that patients can't...

Hope the infusion goes well. My daughter's infusion is next week as well, so I'm with you on the coronavirus fears. I'm hoping that all the nurses will be masked (and we will be too). Our regular GI appt is today, but it will be by phone this time around.

I remember how EEN seemed hard, even impossible, to me when our doctor first brought it up. My daughter has a lot of physical sensitivities, so I just couldn't even imagine it. She wasn't able to drink formula so she needed an NG tube. The first day the tube was in, it was very uncomfortable...

I'm actually not sure how fast (or if) the budesonide worked. My daughter was really sick right at diagnosis, but her doctor started her treatment with just Remicade, to see if that would be enough. Through the next month, she just kept getting worse, so then we added EEN, which helped some but...

I don't have any advice for you, but I'm so sorry to hear all this, and I'm sorry that this is all happening now. I hope that whatever you end up doing works really well and gives your son some relief.

Really glad that she was able to get home! If O's symptoms continue at the same level, this might be a good time to reconsider EEN, either oral or through a tube. It would be so much easier than SCD (for her and you!), and so much safer than prednisone right now. She might be willing to...

We're hanging in there. Oregon schools also closed last week and will be closed for at least 6 weeks. E is super bummed about the possibility of missing the rest of senior year and all the events that go with that. The kids and I are staying close to home--haven't even gone out to go grocery...

Hi there. Sorry to hear about all that your son has been going through this past year. Unfortunately, it is not uncommon for diagnosis to take such a long time. I hope the endoscopy and colonoscopy will give you some answers, and it shouldn't matter if your son isn't flaring right at the moment...

So glad to hear this, Maya. And that's amazing that she's so close to graduation, with all that she's dealt with the past few years. I hope this new drug works well for her.

Oh Maya--you are really stuck between a rock and a hard place. I'm so sorry. Is there no way for her to get put on the new drug without the in person visit?

I'm sorry that you're having to deal with so much uncertainty right now--it's scary when you are waiting for results and appointments. It sounds like you are doing everything right, though, and it's great that your son is feeling better now. Try not to worry too much until you've gotten the next...

Sorry to hear about your flu, crohnsinct--hope you have a fast recovery.

Tesscorm: The issue right now is trying to keep the spread slow enough that hospitals are not overwhelmed. Many of the 15% who do get moderate to severe symptoms need to be in the ICU for several weeks, and hospitals don't have the space (or personnel, especially if medical staff are sick or...

Sorry to hear about the weight loss and other issues. I hope the scope gives you some answers. I agree about also doing an MRE or pill cam, especially if the scope doesn't show evidence of IBD.

No, Kaiser requires us to switch, and that is hard since we love our pediatric GI. I think it's just a caseload issue, since Kaiser in Oregon has just 2 pediatric GI's (and that's up from the 1 that they had when E was diagnosed). There are dozens of adult GI's, so there's no scarcity there.

Sorry to hear about all that your kids are dealing with--that's crazy about the VAD! I hope the upcoming remicade infusion is enough to get S through to his next GI appt. E has also been having nausea, constipation and fatigue for the past few months, along with calprotectin results that have...

Sorry that you are having to deal with this on top of IBD. My daughter's first Crohn's treatment was Remicade + methotrexate. Her doctor took her off methotrexate after 1 year, and she then developed a mild case of psoriasis on her scalp. We treated it topically using clobetesol which helped...

So sorry to hear about all you're having to deal with. Even if you can't get home infusions, maybe things will be better when your son turns 18 and can use the in-network infusion center? I also agree that it's strange that you're being charged extra for the out of network infusion, when that is...

More great advice--thank you.